Tag: parenting

My Apologies

Last spring, my son and I went to a baseball game with friends to celebrate their son’s birthday. We had a great time, mixing cheering for the home team with ballpark food and catching up. Our Phillies won in dramatic fashion in the bottom of the ninth inning, which the birthday boy thought was an amazing present from the team.

After the game, I texted to thank them for inviting us. As we chatted, our friend included an apology for his son’s relentlessness, which, during the game, I took as enthusiasm and excitement for the experience. Instinctively, I responded by telling him that he should never apologize for his son and assured him that we had fun and that it was a delight to be a part of his son’s special day.

I’ve been thinking about that interaction a lot since then.

We’re fortunate to have people in his life who know our son and appreciate him for who he is. These include the teachers at his school, for example, and the doctors, nurses, therapists, and other healthcare providers with whom we interact regularly. They see and accept him, and they don’t make him feel like he needs to apologize for being himself. It includes friends who have children with similar conditions and other friends who have taken the time to get to know him.

But how many times have I apologized for my son to the outside world, whether it’s his inability to know when to stop telling a joke, his impulsiveness, or his awkwardness? Where is the line between apologizing for an act and apologizing for a person? Is there even a line? What if you can’t separate the actions from the person or the condition?

I apologize when he doesn’t understand something other kids do, when he’s unaware of the world around him, or when he’s too tired to function. Even without the special circumstances, I feel like I’m the type of person who would apologize for him doing things or just being a kid because the expectations I often set are based on how I think he should be, what society expects him to be, or, also unfairly, what an adult is expected to do.

Whether it’s because he sees me do it or not, I have noticed that my son apologizes a lot, too. In some cases, it’s justified to apologize for an action that impacts a person around him. Other times, he’s apologizing for something he can’t control or a symptom of his condition, like his struggle with his memory or his attention. Those are the times when the apologies can bleed into his identity and how he feels about himself, which is what I am desperately trying to avoid.

Because we never want him to feel like he needs to apologize for who he is.

Ever.

Family Matters

When my son first started having seizures, we had just moved to Philadelphia. We were in a new city with no family and no support system in place. We navigated the fear of losing our son by ourselves.

My parents were elderly living in Florida. There wasn’t much they could do. My wife’s mother was running a business in Colorado. We told our parents that there was nothing they could do partially because we didn’t know what anyone could do, and partly to free them from the burden of responsibility.

Along the way, we were supported by our children’s hospital, and the doctors, nurses, therapists, and other caregivers. We hired nannies to help with caring for our son at home. But these were either health care professionals or people we had to seek out and pay for. That made our support system transactional and expensive, and left us still feeling isolated and alone.

A few years ago, my parents moved to Pennsylvania. It was nice to have them closer, and we were able to occasionally leave our son with them for a night so that we could go on late date nights or spend a night away. My father doesn’t drive anymore, but my mother could also pick up our son from school if we got stuck. And while we desperately needed help when my son’s health was at its worst, it was still nice to have the help now.

Around the time when my parents moved, we also reconnected with my family in Connecticut. During the pandemic when we made our excursions to Maine, we would stop to visit them. My cousin started coming down occasionally, too, to spend time my with parents. When my parents moved into the assisted living facility, our cousin would stay with us and it was awesome.

This spring, my mother had a stroke. I learned about it when I grabbed my phone lying in bed next to my son after he had the biggest seizure he has had in years. It was a rescue medication type of seizure, followed by messages from the nursing facility and my father about my mother.

My wife and I switched into caretaker mode and made a plan. She would stay with my son and I would attend to my mother and check in on my father. I quickly got dressed and headed to the hospital.

When I got to the hospital, my mother was in poor condition, but she was stable in the intensive care unit. Once I got the report from the nurse, I texted the family. That was mid-morning, and by early afternoon, my cousin and an uncle had made plans to come to Pennsylvania.

For as familiar as navigating a hospital in response to a crisis was, it was a different experience knowing that help and support was coming. That feeling of having someone show up for you is one that I’m only used to with my wife, who constantly has my back. Having family here meant that we could also focus on my son without worrying about my mother, and also mix in time with my father and time to rest, which we are not typically able to do when these crises occur.

What could have put an overwhelming amount of stress on my wife and I turned out to be manageable thanks to the support of our family.

I’m happy to report that my mother continued to recover and went home the following weekend, and my son took a few days off but was able to go back to school and even play baseball that weekend.

3,128

We are almost as much a Lego family as a Marvel family, so when Lego releases a new Marvel set, it quickly finds its way into our house.

A 3,128-piece Lego Captain America Shield had been sitting in a box in the basement for a few weeks. One day, my son casually mentioned that he was working on it, and then, a few days later, he said he had finished. He brought us down to look at it, and it was amazing. He was so proud of himself for accomplishing such a marvelous (ha!) feat.

The next morning, I went to the basement to grab trash from work we had done. There were long metal rails supporting the old ceiling tiles that we took down, which I had bundled. I picked them up, and as I turned towards the door, I heard a crash behind me.

I turned and saw the Captain America shield that my son had spent days making and had completed just the day before knocked over, with pieces strewn across the floor.

My heart sank. I was devastated, thinking how devasted my son would be when he saw what happened.

I was going to head to work after taking out the trash, but I knew I couldn’t leave before attempting to put the set back together.

I collected the pieces and found the instructions, which were in a book that was about half an inch thick. I flipped open the pages, and it was at that moment that I realized I might be in trouble. The set was extremely complicated. I’m a pretty good engineer and skilled at figuring things out, but it took me some time to understand the construction. Square bricks making a round shape is not an intuitive concept.

It took me more than an hour to repair what I had done. Fortunately, the broken-off segments stayed intact, and the individual pieces were easy to identify and replace. But, in scanning the instructions, I had that feeling that I sometimes get when, for as much as my son struggles, he does something like this, and it blows my mind.

When I told my son what happened, I made a big deal about how impressed I was that he did the set all by himself. I told him how overwhelmed I was when I opened the instructions and tried to understand how the pieces fit together. Then I reminded myself of what he does when he believes he can do anything. Once I adopted that mindset, I was able to fix the shield.

He was proud of himself, not only for accomplishing the daunting task but also for inspiring me to believe that I could do anything. He doesn’t realize that he teaches me that every day by demonstrating it time and again.